Bible Hill mother who lost son to brain tumour hopes new registry can help others

Wanda MacDonald hopes the statistics provided through the brain tumour registry will result in government funding for research. Her son Matt was 14 when a brain tumour caused his death - Lynn Curwin

BIBLE HILL, N.S. —

Not a day goes by that Wanda MacDonald doesn’t think about the son she lost almost 19 years ago.

She remembers his courage and kindness, she wonders what he’d be like today, and she feels pride in the fact that he’s still making a difference in the world.

Matt MacDonald was 14 when he died following surgery to remove a brain tumour.

“Matt’s been gone almost 19 years and a lot has changed during those years, but not enough,” said Wanda.

“Provincial and federal money hasn’t been going to brain tumour research because there are no statistics available. With the launch of the brain tumour registry this will, hopefully, change.”

The Brain Tumour Registry of Canada, launched May 14, will count every brain tumour in the country. It's hoped the information will help identify where the tumours are prevalent, which people are being affected and what treatments are the most helpful.

“Brain tumours are unlike other cancers because the brain runs the body and a lot of people with brain tumours live with a lot of deficits,” said Wanda. “It can affect hearing, vision, learning, memory. More children are surviving with brain tumours but they’re living with deficits. It’s important to give them good quality of life.”

In 2006, Matt’s parents and the parents of Brandon Dempsey, an Amherst boy with a brain tumour, approached Cumberland-Colchester MP Bill Casey for help. Casey put forward a motion in the House of Commons to develop a brain tumour registry.

“I want to recognize Matthew MacDonald from Truro and Brandon Dempsey of Amherst, two young Canadians who did not survive their brain tumours,” Casey said in the House the day before the launch. “Without their courageous fights and the support of their parents, the Brain Tumour Registry would not have been created.”

Wanda was pleased to have Matt ‘s contributions recognized.

“To have him remembered all these years later and to know he’s still part of change means a lot to us as a family,” she said. “In his short time, he did make a difference. He was very public and open about his illness and was involved with Cops for Cancer, Brain Child, and the hospital. We’re still so proud of him.”

Matt had just turned 11 when the tumour was discovered.

Because he was having trouble with his vision and getting headaches, he was taken to have his eyes checked.The morning after the exam, Wanda took him to the hospital for blood tests and their family doctor tracked them down to say a CAT scan was needed. She knew then it was serious.

Matt was soon at the IWK. He went through five rounds of chemotherapy, an infection that almost killed him, and six weeks of radiation that made him very sick. He also had a shunt installed and went through 10 surgeries over a three-year period to clear the shunt.

“He lived for three-and-a-half years after the treatments and I count every day as a blessing,” said Wanda. “He had to grow up so fast. It affects the whole family and he got us all through it by being so strong, brave, loving and accepting.”

On Dec. 15, 2000, following surgery to remove as much of his tumour as possible, Matt slipped into a coma. He passed away two days later.

Matt is never forgotten.

His sister Chrissy now has a daughter whose middle name is Mattie and his family often thinks, and talks, about him.

“Special moments are a little sad because our family isn’t complete anymore,” said Wanda. “I hope some day no other mothers will feel the way I do every day. I hope this registry is a step in this direction.”